Have you read Badger’s Parting Gifts? It’s a beautiful story book written by Susan Varley that engages children in thinking about all the gifts people share prior to dying, an elderly badger and his woodland friends bring this to life. We shared it as a family when my mum in law died quite unexpectedly, it was incredibly cathartic, Beth my daughter, Mike my husband and I all cried together as we read it, until then we’d ‘held it together’ and got on with stuff that needed to be done. You can take a listen on YouTube here
If I was to have one ask of Susan, the author, it would be to write another book, sharing that you don’t need to be old to die, death can happen at any stage along the life continuum and the person who leaves us always imparts gifts no matter what their age.
In 2017 7653 babies, children and young people died, 21 every day in the UK (ONS Statistics), with 700 of those children dying in London. Reasons include neonatal events, malignancy, chronic medical conditions including chromosomal, genetic and congenital abnormalities, infections and sudden unexpected, unexplained deaths and accidents. Safeguarding incidents are another reason for child death.
We were reminded of #VictoriaClimbie this week by @UKVCF and @lorraine_tinker (another of my Children’s Nursing heroes) tweeted a picture of Victoria’s mum speaking to a conference back in 2008 aiming to ensure that no other child should suffer as Victoria did and that her legacy would not be forgotten.
Children die in a range of places including hospital environments, at home, in public spaces, in hospices and other areas.
Reviewing and the sharing lessons learnt about children’s death is a key priority of the reforms to the Child Death Review process that are being embedded this year across England. From the 1st April we’ll have a National Child Death database in England that will mean all the information on child deaths will be in one place, which will assist in thematic analysis and sharing learning widely. The Child Death Review statutory and operational guidance offers further details https://www.gov.uk/government/publications/child-death-review-statutory-and-operational-guidance-england
The Healthy London Partnership team @HealthyLDN have a programme of support to assist organisations in addressing these changes https://www.healthylondon.org/our-work/children-young-people/child-death-review-programme/ (useful even if you’re working outside London).
Over the past year I’ve had the privilege of working with an organisation where we’ve really worked to improve experiences of care when child death happens. This was driven by the NICE End of life care for infants, children and young people Quality standard [QS160] https://www.nice.org.uk/guidance/qs160 and also the @NHSEngland learning from deaths work https://www.england.nhs.uk/publication/learning-from-deaths-guidance-for-nhs-trusts-on-working-with-bereaved-families-and-carers/
In both of these programmes parents have been directly involved, the voices of people such as Dr Zoe Picton-Howell who tweets via @4AdsthePoet have been powerful and valued in driving cultural change.
Sadly however for families this work hasn’t as yet been universally adopted, as the wonderful charity @Tog4ShortLives reflect https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/bereavement-care/ more supp ort from commissioning organisations would be valued. perhaps 2019 will be the year we address this challenge in all areas?
Our local group has brought colleagues from other local Trusts, Universities, Children’s Hospices, Haven House @HavenHouseCH, Richard House @RichardHouseCH, and the wonderful charity Child Bereavement UK @cbukhelp together. This is where I need to give shout out to CBUK’s animated annual report, it’s so worth watching https://childbereavementuk.org/impact-report-2017-18/ Together we’ve planned and delivered study days on End of Life and bereavement care thanks to our local practice development nurses @AnnalBray @brownbec @PaedPDNSRLH and the Trust End of Life Education team, this also focuses on caring for staff which we must never forget if we are to retain professionals who are repeatedly exposed to distressing situations.
We’re also working to adopt the Advanced Care Planning process http://cypacp.uk/
Thanks to @Rosamund1010 and with support of @Barts_Charity any family where an adult dies in hospital and there are children in the family, books are gifted to help explain difficult and upsetting situations. This is wonderful thoughtful practice and is hugely valued by families.
@_4Louis provide us with very special memory boxes to gift to families which are beautiful.
We’ve so much more to do though, one of our most special meetings of the year was when a family joined us to share their experiences, it reinforced why this work is so important. Ensuring families get information such as ‘Information for families when a child dies’ https://www.england.nhs.uk/wp-content/uploads/2018/07/parent-leaflet-child-death-review-v2.pdf with care that’s kind and compassionate from staff, are the key elements of memories that will remain with families for ever.
Children and young people when they die leave rich and important legacies, those gifts referred to in Badger’s story.
Organ donation is perhaps one element we are talking about more, Max and Keira’s families demonstrate the impact of donation in an incredibly moving short clip
For health care professionals if you haven’t read ‘Follow the child’ by Sacha Langton-Gilks @SachaLG mum of David, or DD as he’s known, here’s a blog Sacha has written on anticipatory grief http://www.icpcn.org/follow-child-blog-anticipatory-grief-sacha-langton-gilks/ I’d really recommend you invest in a copy of her book or ask your Trust/University library to buy a copy. It should be on all university reading lists for Nurses, Doctors and AHPs.
‘Living with Lennon’ is a blog written by Nikki, Lennon’s mum and she talks very articulately about her grief, do follow her @LivingwithLen5 https://livingwithlennon.co
Just this week @Tog4ShortLives tweeted that ‘The #childrensfuneralfund – announced by the government last April – is still yet to be introduced 📻 Listen & share from 2:50:50 for a powerful interview with @carolynharris24 & Alison on why this support for bereaved parents is absolutely vital https://www.bbc.co.uk/sounds/play/m0002r3g it’s a powerful listen that brings to the forefront of our minds just how much families struggle in the darkest of times.
So to end where I began ‘Badger’s Parting gifts’ for me is a call to action, of course as health professionals we MUST do everything we can to prevent child deaths, safe competent care is so vital in this. Whenever a child dies we must use the gift of information wisely to help us prevent future deaths, yet disseminating information, ensuring it gets to those directly delivering care is a challenge, I suspect that’s another blog…. as is the importance of staff care….
So some asks? What can we learn from each other as we prepare for the changes to statutory processes this year? What difference can we and our teams make to the memories of families when the death of a child happens? after all we only have one chance to get this right…
As always thoughts, links would be really valued …..